Rock the Red Survivor Stories: Andrea’s Story

This year, for Rock the Red, I brought on fellow survivors who were willing to share their stories. Ladies whom I crossed paths with in an online support group for Women with heart disease. For years, I didn’t participate in any sort of support group; always thought I had things under control. But like anyone with a chronic illness or disease, it helps to have that extra support from others going through similar situations – a reminder that you to are not alone in the fight. I’d like to introduce Andrea. Andrea has recently begun her journey dealing with heart disease, but with her positive attitude and children by her side, she’s tackling this challenge one day at a time.

I would love to share my story!!! I am a 41yo women recently diagnosed with stress induced cardiomyopathy on December 6th, 2019. This is my third round of fighting CHF due to cardiomyopathy with my current EF at 20-25%. I will never quit fighting and plan to be around for my children as long as I can! The hardest part was not being able to work (as a 17 year veteran teacher) and bring my own kids to school with me. CHF is a condition that does change your life, but it does not define who you are or can be!!! It is a part of my daily life with medication, diet, and limited activity. I am even wearing a Life Vest while the medicine is working to heal my heart. I am strong, positive, and surviving CHF one beat at a time!

Wishing you well, Andrea!! Thank you for sharing your story!! Stay strong, girl!!

Rock the Red Survivor Stories: Ali’s Story

This year, for Rock the Red, I brought on fellow survivors who were willing to share their stories. Ladies whom I crossed paths with in an online support group for Women with heart disease. For years, I didn’t participate in any sort of support group; always thought I had things under control. But like anyone with a chronic illness or disease, it helps to have that extra support from others going through similar situations – a reminder that you to are not alone in the fight. I’d like to introduce Ali. Ali, like myself, has been dealing with heart disease for over a decade now. Ali has faced many aliments over the years, but she continues to live her life and turn to faith for additional support. No matter what life has thrown at her, she’s fought back! Here’s Ali’s story…

Hi everyone my name is Ali Arthur . This is my story of me and my heart:-)

In May 2001 I was in northern Maine, driving my school bus like I did every day. I was in the middle of my route when I started to feel sick, had to pull several times before I got the kids to school. Asked my boss if I could go home said yes. For three days I was weak, sick and had a massive headache. Called family doctor got in the same day. Blood pressure was off the charts, he took some tests and told me he was calling my husband. When he arrived, he said that I was having a silent heart attack. When all tests were confirmed, I had a massive heart attack, lowed part of my right muscle out of heart. They shipped me to Bangor Maine, 150 miles away to where there was the only place that could work on me. When I got there, they found out that my thyroid was bad and I had hyperthyroidism. They figured that is what caused the heart attack. They had to fix my thyroid 1st before they could fix my heart. 17 days later, I finally had open heart surgery, had a triple bypass, and remained in the ICU for many more days after. I did not come out of it very well. When I finally got home, I wasn’t home but a day or 2 and developed pneumonia and ended up being put in the hospital again for another 2 weeks, followed by a nursing home to do rehab and to learn how to do other things with my left arm. Yes, time kept going but I wasn’t getting any better. I ended up having lymphedema and my left side and part of my stomach had to be wrapped. This was very painful and I had to stay wrapped in these bandages for many weeks until the water come out of my leg and stomach. When I was in Bangor, they attempted to do another catheterization to check things and when I was taken back to my room, the cart pusher was messing around and the sandbag fell off my leg and I ended up with a blood clot in my right leg. I couldn’t hardly walk because my leg was so swollen. For the next few years, I was constantly in and out of the hospital with water retention, unstable angina, and other small things that would happened to me. I decided to move to Indiana and while I was here, I began having some minor heart attacks and ended up going back to the hospital again, where they did another catheterization and ended up having to put 3 stents into my chest. In order because 1 of them went thru one side to the other so in order to save my life, they had to put 2 more in for 3 stents total in my heart This was all in 2007. In 2008, I developed anemia, which did not help with my heart because when you have a anemia, you have a very hard time breathing. In 2013, I had a small stroke that went through my eye and it caused some problems with my vision and that’s when I got my defibrillator put in. I have a Metatronic defibrillator and I have not had any problems with it yet. In another few months, I will be getting a replacement, having the batteries changed out. I also have asthma, which I have had all my life, so between my thyroid and my anemia, and my heart, you can’t win because you everything together this you not to be able to breathe and you’re tired all the time and you feel like you run a race when you haven’t.
In 2014, I was diagnosed with afib and heart failure. I had to quit working because of constant fatigue. I have a wonderful cardiologist who calls me one of his special children. The medicine I take are better than the ones I took at the beginning. I don’t use salt and I rinse canned vegetables and I watch portions.
My diagnosis is as follows
Extreme right muscle heartattack .
3bypass also called cabbage
3stents
Coronary artery disease also called cad
Chronic systolic chf nyha class 2
Ischemic cardiomyopathy
Iron deficient anemia
asmama
Unstable angina
Acute hypodermic respiratory failure
Acute systolic heart failure
Afib
I just wanted to say in closing that’s women’s heart attacks are not always the same as men’s. We don’t always have classic chest and left arm pain, but we can have right wrist pain. Jaw pain, like a really bad toothache, and pain in the middle back between shoulders can be felt. I learned a long time ago not to worry so much about numbers and things that have already happened. I gave myself to God. One thing about not worrying so much is that you will live longer. Live for you, your family, and those who love and care about you. If you feel like you are depressed, ask doctor for medication; it’s nothing to be ashamed of. It is a tragic thing to go through.

Remember…LIVE FOR YOU, LIVE TO BE STRONG, IT’S NOT A DEATH SENTENCE! Love, Ali

We wish you well, Ali!! Thank you for sharing your story and letting others know that they are not alone in the fight!!

Be a pebble in the water

Standing on the shores of a still pond, pebble in hand, you admire the mirror like reflection bouncing off of the top of the water. You toss the pebble in, and a series of small ripples flow outward from where the pebble just landed. Slowly but surely, the entire body of water is touched by the movement of this single pebble, ripples eventually making their way to the shore.

As I handed out red ribbons a few days ago to a group of individuals and began explaining the Rock the Red event coming up next month, one of the young men spoke up,

“There’s no way that 1 person can make a big difference?” He said as he examined the red ribbon in his hand. “So why do this?” The young man was puzzled and unsure how wearing a simple red ribbon could have any kind of impact at all.

“We’re spreading awareness!” is what I told him. “Someone is bound to ask you what you are wearing red for and you will tell them that you’re Rocking the Red for Women with Heart Disease.”

“But why only women?” he asked. And so began a brief conversation of why the focus was on the ladies and why it was important to discuss heart disease. Through maybe 10 minutes of speaking, I was able to offer some facts, some resources he could research online, as well as some personal tips I’ve learned from my own experiences-all of which he could take home and share with others. Later that evening, this individual reached out to me on messenger, thanked me for the information and shared with me the conversation he had with his mom. It was at this moment he realized that distributing a simple red ribbon sparked a conversation between us that ultimately resulted, in this case, him speaking to a loved one and encouraging her to seek out the medical care she needed because of the symptoms she had recently been experiencing. It was his “Ah-ha!” moment and he realized how a single person and a single red ribbon could create such a ripple effect and touch so many others. Needless to say, he was pumped when I told him I was able to mail him some ribbons he could share with his family and friends.

If you ever have doubts about how you can reach out and have an impact on the lives of others, remember, you to can be that tiny pebble creating ripples in the water.

“Just as ripples spread out when a single pebble is dropped in the water, the actions of individuals can have far reaching effects.” Dalai Lama

Fearing the big 4-0!

It doesn’t seem possible – my 40th birthday is just around the corner! For years I had stressed about approaching this next decade, nervous that my mid 40’s would quickly draw near – an age that no one in the family who has had a heart condition similar to mine has lived past. It’s funny how a simple number can create so much stress and anxiety. To put it simply, I was completely freaked me out!! I felt like I was waiting for my expiration date to approach. But I didn’t want to be like that. Even though the fear of death in my 40’s still laid inside my head, I spent much of my 30’s bound determined to find ways to work through my condition so that I wouldn’t end up with the same fate. What can I say, I have been and always will be stubborn and will push myself to the limits rather than give up and throw the towel in. Regardless of what was going on in my head, I had to go above and beyond just to prove to myself and others that even though I was “sick”, I could still do everything a normal, healthy individual could do. Don’t get me wrong, there were plenty of times of frustration, but I have always tried to remain optimistic. Wouldn’t you know, that stubborn attitude paid off! My health has improved slightly and the thought of an expiration date in my mid 40’s has subsided. The big 4-0…an age that I had been scared of has now become one that I am actually looking forward to. Through various types of therapy and the love and support of family and friends, I have cast my fears aside and I am ready to live life to the fullest; ready to live on through my 40’s, my 50’s and many years beyond. Age truly is a number. It’s time to forget those numbers and simply live. New opportunities await each one of us and new adventures are ready to be had. To my fellow friends and family also hitting a milestone this year – forgot those numbers. Set some new goals and dream some new dreams. One decade of your life may be ending, but a new one has just begun. Embrace it and enjoy it.

Happy Milestone Birthday to all those having one!!

It is not death that man should fear, but he should fear never beginning to live.

Marcus Aurelius

Make the switch, Lower your risk

With the month of February approaching, love is beginning to fill the air.  Red envelopes and mushy cards line the card aisles and store shelves are stocked with heart shaped boxes filled with all sorts of delectable treats.  Local florists prepare for the surge of orders for red roses and restaurants begin advertising their romantic dinners for two. But the month of February isn’t just a month that we celebrate Valentines Day.  It has also been designated as American Heart Health Month, which is jump started by the National Wear Red Day campaign, a day when everyone wears red in support of creating awareness about heart disease in women.  Naturally I participate as do my fellow employees as well.  Last year, I decided to do something different during heart month  and came up with an idea to show the impact of heart disease on our female population at work that I would like to share with all of you.

Sources indicate that 1 out of 3 women die of heart disease and stroke each year.  What’s scary is that 80% of those women who died were due to preventable risk factors.  Being overweight, smoking, eating a high sodium diet, not managing diabetes, being inactive,  not managing stress – these are all risk factors that with the right help and education, any women can change in order to lower her risk of being faced with heart disease or stroke.  The other 20% died due to unpreventable risk factors such as age or genetics – things that can unfortunately cannot change.

But anyone can read statistics on paper.  I decided to put these statistics into a whole new perspective.  To exhibit the impact of these numbers at work, I choose 1/3 of our female employees as volunteers and of those volunteers, 80% of them were given my black “Make the switch, lower your risk” t-shirts to wear to exhibit the number of deaths due to preventable factors while the other 20% were given pink ones exhibited the number of deaths due to factors that could not be changed.  As you can imagine, with a group of 50 employees, majority of which were women, it became evident that the impact of such statistics could have a profound impact on just our workforce alone.  That is where I came up with the “Make the switch, lower your risk” logo that was printed on the volunteers t-shirts.  So what does it mean to “Make the switch, lower your risk”?  It’s a reminder to make a switch in your lifestyle to lower your risk of heart disease or stroke.  Even the simplest of switches in your lifestyle can help to lower your risk and help you to lead a healthier life.  All employees were given goodie bags, filled with things like information about joining our local gym, to stress balls to relieve stress, Oatmeal samples as a reminder to eat a more fibrous diet to Mrs. Dash samples to encourage a salt alternative – all sorts of items to hopefully encourage them to make a switch in order to lower their risk.

As Heart Month and Wear Red Day 2018 approach, my goal is to continue with my “Make the switch, lower your risk” campaign; Not only to bring education and awareness to my fellow employees at work, but to the public as well.  I may not be able to save the by world myself, but I hope to have an impact on at least one individual, to encourage them to make a change and to help them live a happier, healthier life!

“Recognize that every interaction you have is an opportunity to make a positive impact on others.” 

~S. Hyken

Beginning the next chapter

The alarm clock on my cell phone sounded.  As I reached to turn it off, I noticed it read 4:00 am.  For a moment, I couldn’t fathom why I had set the alarm so early.  Then it hit me.  Today was the day.  Today I was saying goodbye to my old defibrillator and hello to a new one.  I was the first scheduled surgery, but living an hours drive from the hospital meant an early rise and a long drive to get there.  Fortunately, my fiance, my father, and my step mother would be there with me to keep me company.

The car ride to the hospital was cold and quiet.  Thankfully, no snow was falling to make the drive difficult, but the temperatures were cold enough to chill you to the bone.  I hunkered down in the back seat of dads car, snuggled close to my fiance, and wrapped myself up with the blanket that I found in the back.  As we reached the hospital, the butterflies in my stomach began to flutter.  I was anticipating a long wait, but to my surprise, check-in, registration, and getting settled into my private room took no time at all.  Surprisingly, I wasn’t as nervous as I thought I was going to be.  Likely due to the fact I had been through this procedure before.  I already had an idea of what to expect.  Before long, a nurse came in to roll me on my way to the operating room.  A kiss from my fiance, a wave to my parents, and away I went.

As I lay on the operating table, the temperature in the room felt cool. Everyone in the room moved in a perfectly synchronized dance around me, ensuring to fulfill any requests to make me comfortable.  The one request I made was to see my old device.  Apparently this was an odd request and wasn’t something that patients typically asked for, but they were happy to oblige.  Medication was administered through my IV and within minutes, my entire body was relaxed.  A drape was then placed above my shoulders and around my head, creating a cozy little tent.  The next thing I felt was a cool liquid being wiped across the left side of my chest, followed by a sudden prick of a needle that administered Novocain to the area where the surgeon would cut.  It stung and felt warm – it was uncomfortable.  Once numb, the surgery would then proceeded.  It seemed like only minutes had passed before I felt a hand touch my right shoulder gently.  The doctor was holding a small metal object in his hand in front of me to see.  “We’re all done Ginny.  Here’s your old device!” I heard his voice say.  I couldn’t help but smile and feel incredibly blessed.  This small, rounded, metal box had given me a chance to live throughout the years without fear of dying.  This box was there in order to save my life and it had served its purpose.  I couldn’t help but look at it and whisper “Thank You”.

December 28, 2017 – the day I ended the chapter on the last decade of my life and began the next chapter with a new device.  For others in my family with heart disease, they weren’t fortunate enough to live past their first chapter.  They never had the chance to live past a decade of being a cardiac patient.  I, on the other hand, have been fortunate to continue on with hopefully many more chapters to come.

Life is a precious gift.  Cherish the chapters you are given for you never know when your book will end.

“Today I close the door to the past, open the door to the future, take a deep breath, step on through and start a brand new chapter.”

Low Battery

Like all things requiring batteries, the lives of those batteries eventually comes to an end.  Even those that are rechargeable will eventually wear out, will refuse to take a charge, and become useless.  Just as our cell phones vibrate or blink to indicate when it’s time to charge them, so does the life saving device that I, like other patients with defibrillators (ICD) or pacemakers, have implanted in my chest to warn me that the battery has little life left.

Recently, after a typical day of working and hitting the gym, I came home and sat down to relax for a few minutes before heading into the kitchen for dinner.  While checking emails on my phone, I felt an incredibly strong vibration running through my arm and chest.  I quickly laid my cell phone down, only to realize it wasn’t the phone that was vibrating at all, it was the object inside of my chest – It was my ICD!!  What a strange feeling to have!! It didn’t cause any pain, but it certainly got my adrenaline pumping (and kept waking me up for the few nights that followed).  Having been to the cardiac device center a few months prior, I was informed that my devices battery was in fact getting low.  Before long, I should expect to have my device replaced.  I was also told the unit may begin to vibrate before my next appointment, a time for me to meet my new surgeon.  Go figure – just days before this appointment was to take place, the vibrations in the device began.  Unlike a cell phone, the batteries in these types of devices can’t be recharged.  No plugging ourselves into the nearest outlet and waiting for the battery indicator to read full.  Just as a check engine light that comes on to warn a driver that the car is close to running out of gas,  these warning vibrations are an indication that its time to have the device replaced as the batteries are close to running out.

So, for Christmas this year, while many will be opening gifts, filling them with fresh new batteries to play with and enjoy, I too will be equipped with new ones as well. Ones that will keep my device running and allowing me to enjoy my life for more years to come.

 

Getting back on track

As we all know, the older we get, the faster time flies by.  Life gets a bit more hectic and soon we find ourselves caught up with every day tasks and mundane routines that before you know it, you begin to loose sight of some of the goals and dreams you had set out to achieve. I am not the first person it has happened to, and certainly won’t be the last.  It has and will happen to all of us from time to time.

Five years ago, I began this blog with the intentions to motivate, educate, and inspire others.  This past year and a half I got a bit off track.  I have been busy working, hitting the gym, working on big projects around the house, enjoying some of my other hobbies, working on my photography and of course, spending time with my family and friends.  I most certainly lost track of writing to all of you – my audience.  Does that mean I have given up on my goal and will give up on continuing on with my blog, settling on the fact that I failed at writing?!  Most certainly not!  Like many goals, obstacles may be faced and some adjustments to the original plan in achieving those original goals needs to be made.

So, here I am, starting once again.  Getting back on track to motivate you to aim for your goals and dreams, educate you on what I have learned over the years about heart health through my own experiences as a patient and caregiver, and to inspire you to keep going when you face those seemingly unbearable challenges.

Motivate!  Educate! Inspire!

A moment to stop and say “Thank You!”

 

“The aches, the pains, the muscle fatigue…no doubt I would end up sore.  Breathing heavy, buckets of sweat dripping from my body, can’t wait to go back for more.”

Training away on the elliptical machine the other day, it hit me – 6 months of working out with my trainer Matt at the gym and I’m still going strong.  Sure, there were a few hiccups along the way and a few fattening holiday meals to contend with, but overall, I am making progress as I continue to move forward, getting fit, loosing weight, and working towards a happier heart.

At the beginning, workouts were tough and I often wondered to myself how I was ever going to make it through a singe day, let alone multiple workouts in a single week.  My body ached and my muscles were sore – Matt had me working out areas I had probably never worked out before.  As many other gym goers would likely agree, leg days were (and still are) the worst-especially the day or two following. Everyday tasks, like sitting down in a chair, walking down a flight of stairs – heck, even sitting down to go to the bathroom were a huge challenge – you literally want to laugh and cry at the same time!  What in the world was my trainer trying to do to me?!  Is the pain unbearable? No.  Uncomfortable? Heck yeah!  But the pain does pass and it’s back to the gym to do it all over again.

I could have easily thrown in the towel so many times and said “forget this!” when things
got a little hard.  But I didn’t, not this time.  There were days I was exhausted after work, but still, I showed up.  I’m sure there were plenty of times I grumbled and groaned, pissed and moaned, but with his upbeat and encouraging attitude, Matt kept me moving along. Then there were (and still are) those times I tend not to speak up, times when I may try to push myself a little too hard…a sudden twinge of pain or discomfort and I probably should speak up, but I don’t.  Times when I say I’m fine, but I think Matt is beginning to learn when I’m full of it and calls my bluff.

So to Matt, my trainer, a huge thank you for getting me back on track and helping me to work towards a fitter lifestyle.  For being a great teacher and sharing your knowledge, even when you may think I might not be paying attention to what you are talking about.  Thank you for pushing me to work a little harder when I needed to and not so much during those times I shouldn’t. And most importantly, for keeping me motivated as I work towards better health.  Continue to be a positive influence to myself and others as you help us to achieve our personal goals.

“Push harder, push farther – push myself to the limit.  Get stronger, get fitter, create a better me!”